Dr Zaher Nahle's No Spin Zone slides

At the recent CMRC Conference, Dr Nahle gave a presentation which 'unfortunately' was hit by technical difficulties and therefore could not be seen on the Livestream - fortunately Dr Nahle kindly uploaded part of his presentation in this post in another thread in a PDF document, here I have simply uploaded screenshots of each page.

ETA: Dr Nahle explained in this post in another thread that he requested that it not be broadcast due to suffering from the after effects of a cold.

This is due to technical difficulties, but hopefully there will be no more of these - huge apologies for the problems this has caused with viewing.

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And here's Zaher's post later in that thread:

Hi Friends,

Greetings from the UK...I participated in the CMRC meeting this week. Thank you all for mentioning and posting on that meeting. In all my talks, including the recent one in Newcastle, I include a section I call "the No spin Zone." I have uploaded those slides from Wednesday (uploaded as a pdf file). I thought I will share...

Organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere.

This is the kind of censorship I would expect in Russia or North Korea but the UK ....at a medical conference ?

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Let's not blow things out of proportion. It could just have been a well-intentionen fib in order to not irritate all the "young men, borderline psychopaths". It doesn't mean Solve ME/CFS is sharing data with the PACE researchers, or anything...

In Russia, on the other hand, the conference would not only not have been streamed, but would have featured a keynote from an Orthodox-cum-KGB anti-gay activist. And in North Korea we'd all have been executed a long time ago.

I wanted to clarify this once and for all and I regret I did not do it before so forgive me

As I mentioned earlier "the meeting
organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere."

Indeed, Sonya and the team were extremely professional with me and welcoming and open not only to me but to all ideas...truth be told. I feel bad that they were accused of trying to silence me or censor me...to the contrary they gave me the floor and invited me as a speaker all the way from the US and I am so grateful for them to enable me and empower me to present our work and our perspective. The talk was also very well received.

I am the one who asked for it not to be livestreamed in a spur of the moment five minutes before the session for a simple (even silly) reason: I was sick and coughing all the time (still am by the way!) so I thought that we can edit out the coughing and sneezing later on (again out of respect to the audience... as simple as that really). The mistake I made is that I did not realize that given the technical setup if it is not livestreamed then it is not videotaped also...so this is the story. I now feel bad and guilty that I may have caused some unfair comments to Sonya and the organizers. So apologies!

Once gain sorry for the confusion folks...from me you only get the truth and the facts...no censorship whatsoever.

This presentation does rather undermine the argument that the good new scientists are likely to be scared off if vocal ME sufferers keep going on about the politics. Dr Nahle doesn't seem that scared, from what I can tell from the slides he basically walked into the lion's den and told them straight that PACE was a pile of crap.

Just as the narrative of the vociferous militant borderline psychopathic ME patient has been shown to be entirely fictitious, I wonder how seriously we should take the narrative of the thin-skinned scientist who has got one foot out of the door and is ready to bolt at the slightest sign of controversy or patients wanting to discuss their concerns.

We have only ever been presented with the threat of losing good scientists in the context of a study involving BPS people. The last time this was dangled over our heads was when we protested against Wallit & co. It just doesn't happen with studies outside the BPS sphere of influence, no-one has told us to mind our Ps and Qs with Fluge and Mella or Ron Davis, in fact from what I have heard @Rose49 has had to put up with a pile of shit on twitter, amazingly without complaining or threatening to storm off. Patient participation is encouraged (thanks @Ben Howell too ).

That is the bar that the MEGA study should aspire to. Appointing Chowdhury as patient representative, constantly swerving discussion of patients' concerns, and telling us to shush in case we scare off the good guys, falls woefully short of that bar.

There are many reasons why a good scientist might suddenly leave the MEGA study - they might decide that they can better contribute to ME research away from the incestuous and corrupt medical establishment in the UK, they might decide that they are not minded to play the game the British way, they might discover that they lack confidence in the integrity of the project or some of the people in it and would prefer to no longer be associated with it, they might decide it doesn't meet their standards for a scientific study, they might read an article by Peter White in the Guardian, they might even be mobbed out by the BPS brigade.

But guess who'll get the blame? Vociferous ME sufferers. No question of anyone else looking at themselves and taking a modicum of responsibility when you can just blame the patients as usual. Well we didn't create this toxic situation. We are not perpetuating it by appointing the wrong people to the wrong jobs. And any problems that arise from it are not our doing.

But guess who'll get the blame? Vociferous ME sufferers. No question of anyone else looking at themselves and taking a modicum of responsibility when you can just blame the patients as usual. Well we didn't create this toxic situation. We are not perpetuating it by appointing the wrong people to the wrong jobs. And any problems that arise from it are not our doing.

These slides are great and whilst I recognise these weren't pointed against the uk situation specifically I think it's voices from outside the country who are and must be most bold in challenging what is probably quite a hierachal, powerful U.K. Establishment who've spent 15-20 years gong the wrong CFS direction (Although Prof Jonathan has also been a welcome plain speaker) And that applies to journalistic voices too.

I rewatched aspects of last years CMRC conference and saw how dr Jose Montoya also spoke about apologies, funding and egos in a way most welcome given the context

Looking at slide 2 (depression =/ cfs) it reminds me that depression activates the HPA axis. Gluccosteriods inhibit HPA axis, and antidepressants restore this inhibition. Are there any drugs that activate the HPA axis?

His slide about CFS and depression is not strictly accurate I'm afraid. HPA axis can be activated, normal or downregulated in depression. Some people with atypical depression have slightly lower cortisol than normal the way some people with CFS do.

This letter of Dr Nahle's indicates how significant a precedent it is that the U.S Goverment's AHRQ (Agency for Health Research Quality) has downgraded its usefulness rating of CBT and GET for ME/CFS. The point he emphasises is the precedent - it is virtually unheard for this sort of downgrading to happen. So the fact that it has, is itself a major indictment of the PACE trial, and the CBT/GET mindset.

"While this process is highly nuanced—and more needs to be done by AHRQ—what is noteworthy is that this decision establishes a precedent. The precedent for rectifying misinformation should not be underestimated in a climate of increased pressure toward the standardization of policies on common data elements for clinical evaluation and other forms of cooperation across government agencies. As such, it is unthinkable that such a precedent from the federal authority that sets the standards on health research quality may go unnoticed ...".

Thought I'd post it here, to help it not go unnoticed.

Edit: Also this excerpt: "... this development was triggered by unrelenting requests from the patient community."

Looking in the July 2016 Addendum (linked to within Dr Nahle's letter), is the following:-

"Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion."

I do not fully understand what is being said in the above, can anyone help? Is the "large trial" referred to here PACE?

And:-

"Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS."

I presume this is saying the trials' eligibility criteria are not screening to accurately identify ME or ME/CFS, so the results cannot be relied on to determine treatments for them? Have I got this right?